Hello everyone,
My name is Jaime I am an 18 year old male and I would like to start off by saying that I do not have lupus but my girlfriend of three years was just told two weeks ago by her doctor that he is pretty much positive she has early lupus. Now, she was already diagnosed with Fibromyalgia two years ago and adding this has really taken a toll on her. I am here to learn as much as I can about Lupus so that I can do everything possible to make her comfortable and happy. She was doing some research today and came across statements saying that lupus can be fatal and it immediately scared both of us, how often can this be fatal? I hope to learn many new things and I hope that you can give me all your pointers. :biggrin:

- Jaime

magistramarla

05-19-2011, 10:38 PM

Hey Jaime,
Good for you for being such a great boyfriend. Your sweetie needs your support right now, and I'm glad to see that you are giving it to her.
First of all, Lupus is no longer considered to be a death sentence. We have several members here who have been living with it for 20 years or more. I'm sure that you will here from one of them. With the proper meds to control it, she can have a long and happy life.
Has she seen a rheumatologist? That is the specialist who deals with autoimmune diseases. She will most likely soon start taking Plaquenil, one of the first drugs that most of us start to take. It can take up to six months before she will notice a difference, but it does help.
Feel free to search through the threads, and jump in with your questions. We'll all try to help. Encourage your girlfriend to come here, too. We'll welcome her and try to answer her questions, too.
Keep doing what you are doing! Learn as much as you can and be supportive for her, and most of all, love her!
Good luck to both of you.
Hugs,
Marla

steve.b

05-20-2011, 04:53 AM

welcome.
like marla said lupus treated properly is not usually a death sentence.
i am almost 50 and had lupus and fibromyalgia for over 30 years.

ritzbit

05-20-2011, 06:20 AM

Welcome =) I'm glad you found our forum, it is so helpful. I'm sorry that you're girlfriend has to go through this but she is so lucky to have someone who cares enough about her to learn about this disease like you. There are a lot of different ways to treat lupus and like they said its not a death sentence like it used to be. I hope your girlfriend decides to join too; this website has done a lot for me.

Peridot20_Gem

05-20-2011, 06:21 AM

Hi Jaime,

Welcome to our lovely family at WHL and there's so many threads for you to venture through and also your girlfriend when she's ready, as knowledge concerning the Disease helps in so many ways.

From when i was 18 till now at 42 i had years of ailments and 3yrs ago i was diagnosed with Lupus with A1 Diseases and Autoimmune diseases over lapping one another and found out i was born with it and i'm still here alive and kicking at 42, so she does'nt need to stress out on that account and like Marla said there's drugs which can help and besides that stress and depression Lupus loves, it makes any symptoms you've got feel abit stronger.

I really admire people such as yourself standing by your partners, as this is when she'll need your support more than she's every done.

((Hugs to you both)) Terri xxx

tgal

05-20-2011, 07:21 AM

You are so awesome! So few people have a good support system even though that is exactly what they/we need!

Yes, Lupus CAN be fatal however it is rare anymore. As long as we take our meds and take care of ourselves it very rarely is. Most of the time the deaths come because someone came off the meds because they think they are well, switch to natural unproven cures or stop taking care of themselves. There are people on this board that have had Lupus for 20 and 30 years. They are taking their meds and always have. I know it is scary when you read that but, as everyone else has said, it is rare.

I understand the need to learn about the disease however try not to focus on what it "could" do to. Yes, you want to be aware so you can watch for things but very few people have all the symptoms of this disease. Some people have mild Lupus while others have a more severe kind. There are also those in the middle. There are things that she can do to keep the flares (bad times) either at bay or limit how severe things get. With your help she will learn those. I guess what I am trying to get across is that her life isn't over because she has Lupus. It may be a different kind of life then she planned but it can still be a wonderful, fulfilling life. Having you on her side is a wonderful step in the right direction!

jaim3

05-20-2011, 08:04 AM

Thank you everyone for all your responses it really helps. I hope to continue to explore the forum and learn new things.

@Marla-- She has seen a rheumatologist but at the time it was for her fibromyalgia. Two weeks ago when her doctor told her about the lupus he prescribed her cymbalta, the only other meds she takes is a low dose of lyrica when of 25mg when she is in alot of pain, she trys not to take it as much as possible because it makes her really loopy adn usually just eats then goes to sleep.

- Jaime

Gizmo

05-20-2011, 08:55 AM

Jaime,
If your girlfriend liked the rheumatologist she saw before, she should make an appointment ASAP. The drugs her doctor has prescribed will NOT stop the lupus from progressing. Cymbalta and Lyrica are often used to treat fibromyalgia and to help with pain, but they won't stop her body from attacking itself.

As Marla so nicely said, Plaquinil is usually the first line drug. Since it can take months to help, rheumies will often prescribe a low dose of prednisone to help patients feel better a little quicker. It also helps to confirm the diagnosis - if steroids help then it is more likely to be lupus or some other autoimmune disorder. MOST people find Plaquinil pretty easy to tolerate.

She is so fortunate to have your love and support. Another message board that might help her is "But You Don't Look Sick." My daughter and I both have autoimmune disorders, but we use different message boards to give each other privacy. You will each need a safe place to vent without worrying about scaring/hurting your partner.

Saysusie

05-21-2011, 12:18 PM

Yes, Lupus CAN be fatal however it is rare anymore. As long as we take our meds and take care of ourselves it very rarely is. Most of the time the deaths come because someone came off the meds because they think they are well, switch to natural unproven cures or stop taking care of themselves.
Tgal..this is, sadly, so very true.
Jaim3; As everyone has mentioned, there are many who have lived a lot of years with this disease. I was diagnosed in 1985 and have now been downgraded to mild Lupus. Since your girlfriend's doctors feel that she is in the beginning stages of Lupus, I am assuming that she is receiving treatment in order to prevent her Lupus from worsening.
If, as others have said, she remains on her medications, makes the appropriate lifestyle changes, maintains a healthy diet, and continues to do light exercises on a regular basis, it is quite possible that she will maintain a relatively normal lifestyle and can maintain a normal lifespan, which is 80+ years now :-)
She is lucky to have you and I admire and honor you for being there for her!

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem

05-22-2011, 02:50 AM

Hello Jaime,

How are you feeling in yourself since joining and knowing the full support of the group and info, which will help yourself and your girlfriend, i do hope she's ok and a little pain free, it is hard but i always hope some member as a day with less suffering.